Meet the Board
Parent Project Muscular Dystrophy’s Board of Directors is made up of parents, grandparents, family members, and friends of those living with Duchenne. Unlike many nonprofits, PPMD’s Board is hands on, not only governing the organization, but directly working within many of PPMD’s programs.
Anessa Fehsenfeld, Board Chairman
Anessa lives in Rockford Michigan with her husband Scott and three children, Bekah, Tyler, and Hudson. Their middle child, Tyler, was diagnosed with Duchenne in 2005. Anessa has served on PPMD’s Board of Directors for 10 years, and as Chairman for 8 years. She is the current Race Director for Mitchell’s Run Thru Rockford, a Race to End Duchenne 5K, which has raised over $1 million for Duchenne research. Anessa advocates on Capitol Hill in support of PPMD’s priorities each year, she participates in and supports numerous grassroots fundraising events, and most recently ran the Dopey Challenge, 48.6 miles, on the Race to End Duchenne Team. Anessa has a Bachelor of Science in Leadership & Business Management from Grand Valley State University.
Lance Hester, Vice Chairman
Lance lives in Gig Harbor, Washington. He has two sons, including Micah, a teen who was diagnosed with Duchenne when he was 3 years old. Lance is a partner at a small law firm, where he has worked for over 20 years. He is a long time PPMD board member, and has participated in several grass roots fundraising event, run several marathons raising funds for PPMD, and has a passion for PPMD’s advocacy efforts.
John Killian, Treasurer
John lives in Dallas Texas with his wife, Stefanie, and five children, Abbie, Nick, Ben, Sam, and Sophie. Their youngest son, Sam, was diagnosed with Duchenne muscular dystrophy in January 2005. John is a Director and Chief Financial Officer of a private real estate fund with Clarion Partners.
Joanna Johnson, Secretary
Joanna has been on the board of PPMD since 2015. She and her husband Paul live in Downingtown, PA with their two sons, Elliott and Henry, who were diagnosed with Duchenne in 2007. Joanna has a BA in English and Spanish and earned her Master’s degree in Education, specializing in students with diverse needs. She is currently a high school Spanish teacher. Soon after the boys were diagnosed, the Johnsons found PPMD and immediately got involved. The Johnsons have organized a local community 5K event to support PPMD. Unionville Run for our Sons had its inaugural race in 2009 and it continues to be a tremendously successful run that raises over $50,000 per year. Joanna has been a speaker at various conferences to talk about the effects of Duchenne upon the family and the clinical trial experience.
Rasha’s son was diagnosed with Duchenne aged 3, in 2016. She started her career in asset management on the buy-side. After obtaining her MBA ,she joined Shell Gas and Power where she helped lead Shell LNG Trading’s Middle East division. When her first child was born, Rasha and her husband moved back to Kuwait and she went back to Asset Management to build a global portfolio of Infrastructure and Energy investments for Kuwait Fund. Rasha received her MBA from INSEAD and her Bachelor degree in Computer Science from Kuwait University. She is now based in New York, where her husband is a diplomat and her boys go to school.
Jeff Bigelow, MD
Jeff’s son Henri was diagnosed with Duchenne in 2012 at the young age of 2. Jeff is a neurologist, specializing in epilepsy, at Intermountain Medical Center in Murray, UT, practicing since 2012. He grew up outside of Salt Lake City, UT. He attended the University of Utah for undergraduate, then New York Medical College for medical school. He then completed training in neurology at Yale-New Haven Hospital in New Haven, CT, then relocated to San Francisco for a two-year fellowship in epilepsy and clinical neurophysiology fellowship at University of California, San Francisco Medical Center. In addition to his volunteer work with PPMD, Jeff runs a non-profit, Zion’s Children of Haiti, providing education and food support to children in Gonaives, Haiti. Jeff lives in Millcreek, UT with his wife Alexis with three children plus one on the way (due August 2020).
Linda Cripe, MD
Dr. Cripe is a professor of pediatrics and a pediatric cardiologist for The Heart Center. She is also a member of the physician team for the Neuromuscular Disorders section of The Neurosciences Center at Nationwide Children’s Hospital. Dr. Cripe completed her residency at the University of Iowa Hospitals and Clinics. She served as a pediatric cardiology fellow at the University of Iowa Hospitals and Clinics, and at Children’s Hospital Boston. Before coming to Nationwide Children’s, Dr. Cripe spent 12 years at Cincinnati Children’s Hospital Medical Center. Dr. Cripe’s clinical interests focus on non-invasive cardiac imaging specifically echocardiography as well as on the care and treatment of cardiomyopathy associated with neuromuscular disease, such as Duchenne muscular dystrophy. She was a member of the Centers for Disease Control (CDC) National Steering Committee Duchenne Muscular Dystrophy Standards of Care, and has been an invited lecturer nationally and internationally on cardiomyopathy related to Duchenne.
Gretchen lives in Mukwonago, WI with her husband Brian and her mom Rose. She and Brian have two adult sons–Alex, who lives in Denver, and Nick, who lives in Whitewater, WI and attends the University of Wisconsin, Whitewater. Nick was diagnosed with Duchenne in 2001. Gretchen earned her B.A. in English Education from Illinois State University and an M.S. in Reading from UW Whitewater. She teaches high school English and is an avid trail runner. Gretchen is a Coordinator of the PPMD’s Connect Wisconsin group.
Jonathan Finder, MD
Dr. Finder is a Professor of Pediatrics at the University of Tennessee Health Science Center and an attending pulmonologist at Le Bonheur Children’s Hospital. Dr. Finder was the first author of the 2004 American Thoracic Society Consensus Statement on the respiratory management of patients with Duchenne muscular dystrophy and many other publications concerning respiratory aspects of this disease. Dr. Finder’s career focus has been in respiratory complications of neuromuscular disease. He is the father of two adult sons and married to Jana Finder, an attorney. In addition to being an avid cyclist Dr. Finder enjoys playing bluegrass banjo.
DeAnne lives in Grand Rapids, Michigan with her husband, Mike, and their two children Colleen and Kyle. Their middle son, Kevin, passed away in 2018 from Duchenne. Both Kevin and Kyle were diagnosed with Duchenne in 2004. DeAnne is a retired Speech-Language Pathologist after 27 years in the public school setting. She has been involved in PPMD’s Advocacy Conference in Washington DC and is currently a Connect Coordinator for the state of Michigan. The Friars have hosted numerous events to support PPMD including the Friar Fight Golf Outing and the GR.1K.
David N. Hofstein
David lives in Philadelphia with his wife Gail. Their grandson, Henry Beyer, who was diagnosed with Duchenne in May 2017 at the age of 4, lives in Los Angeles with his parents Diana and Jon and his younger sister Lucy. David is the senior partner of the Philadelphia based domestic relations law firm of Hofstein Weiner & Meyer, PC. He is committed to doing whatever he can to help those being affected by Duchenne.
Chris lives in Salt Lake City, Utah with his wife, Natalie and 3 living children. Their son, Mitchell Jones passed away from Duchenne in 2013. Prior to his son’s passing Chris started a Facebook page entitled Mitchell’s Journey which has since gained international attention as both a place for healing and insights on the often misunderstood world of grief and healing. Most notably, Mitchell’s Journey has become a beacon of hope to many and an invitation to live a life of significance. The collateral effect of that blog’s universal message is awareness of Duchenne. Chris has a background in leadership development and is currently the CEO of a software/L&D company. Chris is also a public speaker, gaining popularity across a wide range of industries on what it means to live a life of significance, what happens on the other side of medicine, and how to close the gap between what we value and what we do.
Richard is an internationally recognized expert in pre-approval, or expanded access to unapproved therapeutic agents. He serves as Director, Expanded Access Programs & Policy for the GE2P2 Global Foundation, following a more than 41-year career with the Food and Drug Administration (FDA). Working in various capacities at FDA provides him with a well-rounded understanding of the regulatory issues that affect patients. He helped develop the revised expanded access regulations and guidelines, led the creation of the FDA expanded access website, and played an active role in the development of the streamlined application for individual patient access, and the Reagan-Udall Foundation Expanded Access Navigator. Mr. Klein spearheaded the effort to create the waiver of full-board IRB review for individual patient access to unapproved drugs and biologics.
Mr. Klein served as director of the FDA’s Patient Liaison Program in the agency’s Office of Health and Constituent Affairs, the primary agency interface with patients and patient advocate communities. He interacted extensively with outside communities and within the agency’s scientific and policy offices to advocate for patient interests, and to facilitate patient engagement in regulatory activities. He worked closely with patient communities to actively address issues and concerns of patients in a variety of areas, including treatment access to unapproved drugs, product safety, and clinical trial design.
Before taking on that role, he created the FDA’s HIV/AIDS program, working with AIDS activists and advocates to coordinate their input and participation in regulatory policy and decision-making related to HIV/AIDS. Prior to working in patient engagement, he was engaged in policy development and regulation of protections for human research subjects, and provided guidance for institutional review boards (IRBs).
Christine L. Piacentino
Christine is a Senior IT Business Risk and Control Management Analyst with HSBC. Prior to that she was an IT Audit Consultant with Robert Half Management Resources, an IT Auditor and a IT Project Manager. Christine is a Certified Information Systems Auditor. Christine was elected to Parent Project Muscular Dystrophy’s board of directors in 1999 and served as the Secretary from 1999 until 2011. She was re-elected to the board in December of 2014. She is also currently a co-coordinator for the Western NY FACES group and is the NY State Advoacy Captain for PPMD. Christine lives in a suburb of Rochester NY. She is married to Michael and has two children, Kathryn and Jonathan. Jonathan was diagnosed with Duchenne Muscular Dystrophy on December 31, 1997.
The first member of the board with Duchenne muscular dystrophy himself, Colin, 25, lives with his family in Kalamazoo, Michigan. Colin received a B.A. with majors in both music and history from Hope College in 2016. Colin’s academic specialty is the history of music, and he received his M.A. in musicology from the Western Michigan University School of Music in 2018. He is currently a graduate student in the Department of History at Western Michigan University and serves as a teaching assistant. Colin is an active member of the First Congregational Church of Kalamazoo, where he sings in the choir and volunteers with other worship arts ministries.
Beth White, PhD
Beth is a proven biopharmaceutical executive with a diverse skill set and broad knowledge base gained by leading high-performing cross-functional teams through a wide range of business strategy, commercial development, portfolio management, and clinical development challenges in start-up, mid-sized, and large companies. Her background is diverse, with experience at the intersection of science and business across many disease and technology areas, and strong proficiency in the areas of rare disease, biologics and genetic medicines.
Beth had a successful career in the biopharmaceutical industry, with 9 years of experience at a biotech start-up company, followed by 20 years at Wyeth and Pfizer where she led new product planning strategy as Assistant Vice President, Commercial Development, for Pfizer’s Rare Disease and Gene Therapy Business. Beth was responsible for developing the strategy and organizational structure to manage the newly-formed Rare Disease Business Unit, now one of five key therapeutic focus areas for Pfizer BioPharma. She helped to build Pfizer’s Rare Disease / Gene Therapy business by facilitating the completion of many successful licensing and acquisition deals, including the acquisition of Bamboo Therapeutics, and by developing and gaining senior management endorsement of an end-to-end, five-year strategic business plan. Beth led the commercial developments efforts for the Duchenne programs at Wyeth and Pfizer for many years and has always been a strong proponent of including patient and caregivers’ voices in the drug development process.
Beth is Founder of White Biotech Solutions, LLC, a successful biotech strategy consulting firm, and now serves as Chief Business and Strategy Officer for NeuExcell Therapeutics, a startup gene therapy company focused on neural regeneration and repair.
She received PhD and MS degrees with a concentration in Molecular and Cellular Biology from the University of Rochester, and a BS in Biology from Allegheny College.
Brian Nicholoff and his wife Barbara are the proud parents of two sons, Phillip James (PJ) and Justin Alan. Brian is a graduate of Florida International University with a degree in Hotel/Restaurant hospitality management. Brian became a PGA Professional in 1982 and recognized as a Life Member in 2015. His professional positions include Miami, Florida, Ypsilanti and Niles Michigan, and Carmel Indiana. He is the co-developer of Prairie View Golf Club in Carmel, which was created in 1997.
Over the course of 30 plus years, Brian has served on numerous committees, advisory councils and panels, as well as a member of various board of directors for various golf industry and charitable organizations. Brian has shared his expertise in marketing, sales and promotion with many over the years. Today, Brian’s main focus continues to share his story and raise awareness world wide with the protocol named in honor of his son, Phillip James (PJ).
Donna Saccomanno, Co-Founder
Donna is co-founder of PPMD and lives in Yonkers, NY with her two children Thomas and Dean. Donna is a Registered Nurse working in the health and wellness field of Integrative medicine, medical weight loss, and bioidentical hormone replacement. She also has background in pediatrics.